Saturday, July 25, 2009


Today, Jeramie and I had a wonderful opportunity to spend the day at Duke learning from some pretty phenomenal speakers. (A huge thanks to Lisa Quinn for bringing this event to our attention, and to Grandma A & PawPaw for hanging out with Ethan!) I can honestly say that I took something away from every single talk we heard, and more than one session had my head completely spinning with thoughts and ideas! I feel the need to reflect on what I learned, for my sake. I won't be offended if you decide to skip this post altogether, but you may even learn some pretty cool things if you stick with me long enough.

Unfortunately, we missed out on Dr. Milazzo's talk about prenatal echos, so our day began with Dr. William Darden who spoke about the future of heart catheterizations. The things that can be done in the cath lab now are simply amazing! The most exciting part of this session, for Jeramie and I, was learning that Ethan may not be subjected to as many open heart surgeries as we originally thought. It turns out that Medtronic (the same company that makes his pacemaker) has created a valve that can be placed in people with Ethan's condition during a catheterization!! (Read: Does NOT require open heart surgery). The thought is that this will be standard course of care for teenagers in the next 3-5 years, and for children a few years after that (hopefully). So, it's VERY likely that Ethan will benefit from this in the somewhat near future. The thought of sparing him from multiple (at least 5-6) open heart surgeries brought tears to my eyes. However, based on my last post, we know that he'll need at least one (if not another) surgery before we're able to take advantage of this new technology.

Speaking of his pacemaker, we learned from Dr. Jay Campbell that companies are striving to make "MRI friendly" devices. Currently, Ethan can not receive a MRI due to its strong magnetic field (magnets and pacemakers don't really get along), but he will eventually benefit from being able to have a cardiac MRI performed. The hope is that by the time he has a need for a MRI, he'll have a pacemaker that will allow that to happen.

We also heard from Dr. James Jaggers (Ethan's heart surgeon, God's hands in motion, one of my earthly get the idea) about the neurological outcomes for children with congenital heart defects. Y'all know how concerned I was about Ethan's brain activity after his cardiac arrest, so this talk was particularly interesting to me. Although my original concerns have since dissolved, this talk reminded me that we're not necessarily out of the woods. Thankfully, Ethan has one of the "less severe" (did I really just say that?!) heart conditions when it comes to possible neurological problems, BUT there are things we just won't know until he begins reaching (or not reaching) certain developmental milestones. Other than some slight physical delays, Ethan is pretty much on target. We're encouraged that, although he may never be "heart healthy", he will learn and grow alongside his peers. Just as I pray that God will protect and restore his heart, I also pray that He would spare his brain of any damage with future procedures.

These three doctors are extremely intelligent men and did an amazing job speaking in their specific areas. However, it was the session by Steve Catoe that put it all into perspective for me. If you check out his blog, you'll see that he's a 42 year old survivor of a congenital heart defect known as tricuspid atresia. (You can actually read the text of his session here.) I'm pretty sure there wasn't a dry eye in the whole auditorium and I feel like I need to paste his entire talk all over my house! As I listened to Steve, I couldn't help but think about Ethan and wonder if one day he'll be a 42 year old survivor offering encouragement to broken-hearted parents ... and after hearing about these new innovations in technology, and watching this man speak so honestly about being an adult living with CHD, I am encouraged more than ever that Ethan WILL make it, Jeramie and I WILL make it, and the three of us will be stronger because of it. Just as Ethan's broken heart begins to heal, so will ours, and we will share our story as long as we're able.

Aside from the massive amounts of new information I have, a desire was sparked to find a way to reach out to other families in the beginning days/stages of having a baby with CHD. I was sitting in the all-too-familiar waiting room of the PCICU while Jeramie and I were visiting with Jack (one of Ethan's "heart brothers") and his mom. A family was in there, their brand new baby was in the ICU, and I couldn't help but feel their devastation. I wanted to hug that new mama and let her know she's not alone in this journey, but I wasn't too sure how she'd feel about this random stranger sharing in her sorrow. My newest prayer is that God will take this desire and open up some windows of opportunity...I really look forward to what could come of this!

Thanks for hanging with me through all of that. The love and support we feel from our friends, family, and even those of you we've never met, have carried us through and we appreciate you learning right alongside us. Thank you for loving us as we are, but encouraging us to move forward. We WILL make it!


Jamie Fenley said...

That sounds like such a cool symposium. Wish I could have been there! That would be amazing if they can do a cath for Ethan instead of one of his open heart surgeries.
And Joye, awesome about what you can see yourself doing, and certainly you already HAVE reached out to other moms with CHD babies ;)

Jenn said...

Joye, thank you for writing this up! After my week, I just didn't have it in me to go to Duke yesterday.

This is all so encouraging! I share in your admiration for Dr. Jaggers. Tim and I have said that there is no one else we would ever want operating on Charlotte. We have thanked God countless times for gifting Dr. Jaggers the way He has.

I don't think I can read Steve's talk right now- I got teary just reading your post.

I will be praying for God's direction as you seek to minister to other heart families. You have been such an encouragement to me, and I know you will be the same to other mamas.

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